11 August 2009

About Me - a big whinge and some explanations

Remember this painting ?

Click on her to see her larger & to read the words.
Then please hit your back button to come back here.

Well it's probably going to be a boring post...... but I wanted to share. For some who know me, you will also know that I suffer chronic pain every day of my life - yes, every single day, relentlessly!! I do not remember a day without pain :( some days it's tolerable and others it's just not. Today wasn't a good day. This will explain why when I say "Art is my therapy" I really mean it is!! It can distract me a little, sometimes a lot, sometimes not much at all - but any distraction is good, and If I get to create some art in the process of dealing with my pain -then that can only be good :)

It's not only the Fibromyalgia (FMS) that affects me, I have arthritis and I suffer from IBS, reflux and anxiety - they could all be related - the mysteries of it - sigh

Here's a little explanation about what it is, how it affects me personally - Not really a whinge, I just wanted to explain how I am like I am :)


1. My pain - My pain is constant. It is not actually caused by inflammation. Taking arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put in just one place. It can move around, it can become worse in some areas and stay the same in others. Today it is in my shoulder, my lower back and my elbow, but tomorrow it may be in my foot as well and then it might be gone from my foot.. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real. My body hurts, I have a shoulder that needs surgery but I'm very worried about the recovery time, as fibromyalgia means I don't heal or recover all that quickly and as pain is intensified because of FMS I am concerned about having the surgery anyway.

2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, or go out visiting, or socialising but I can't. Please do not take this personally. If you saw me shopping yesterday, but I can't help you with anything today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability (even though it seems I did nothing strenous!!) I don't have much capability, and I am trying to make sure I get some exercise, I'm not a couch potatoe - if I sit for too long, I stiffen up and must move - so I do.

3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age (although being of 'that age' isn't helping matters!!) It may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairs one step at a time. Today I picked up an onion from the fridge and dropped it - 5 times!!! It's frustrating to me too. If you cringe when I pick up a knife, I understand - it's most likely I will cut myself unless I am very careful - so please don't distract me while I'm cutting, slicing or dicing, by screaming at me to let go of the knife.. haha

5. My sensitivities / Intolerance - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes if I have them closed, please don't make me listen to your child scream, or some weird freaked out music. Please don't leave a mess - keeping things in some order around me, when I can't control my own body is the only order I can get!! So when I say I can't stand it.... I really can't stand it. Some days I can't stand heat, other times it's the cold so don't be surprised if I shake uncontrollably when it's cold. It might not even be the cold, it could be my ugly anxiety!! My internal thermostat seems to be broken, and nobody knows how to fix it.

6. My anxiety - shit, this is the pits!! I hate it. It comes at me out of the blue sometimes and stays for days - Sometimes It is triggered by my thinking of the hurtful past, trying to deal with things... being upset by things, or worried about someone - the anxiety - it eats away at my insides and messes with my brain, my thinking is skewed and I know it, but can't seem to stop it. I talk to myself frantically in my head, I breathe deeply, I try to relax - I take a sleeping tablet, or a Xanax, or an Endep - and they help!!

7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. I don't feel depressed every day, I feel frustrated every day though....... Your sincere concern and understanding can pull me back from the brink. Any snide remarks can tip me over the edge. So please if I say "I need spoons" - then handle me with care, I need it..

8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely. I want to work, I want to doesn't mean I can. If I do too much, I will suffer later and be out of action for longer than I would if I just had the day off when I first needed it. I do tend to push myself - and I'm learning to let go of that. I have been through a lot of things that have added to my stress - and those I'm still trying to let go of too... slow slow slow!

9. My weight - I am a little overweight - I would love to lose a few kilos - like 10!! I have hypothyroidism - my thyroid doesn't work and I'm on daily thyroxine tablets to help give me a false metabolism - even my false one doesn't work very well with the fibromyalgia. Either way, it is not by choice. My appestat is broken, and nobody can tell me how to fix it.

10. My need for therapy - If I get a massage every week, don't envy me. I wish I could afford a proper massage every week, it was, after all, what the rheumatologist ordered for me. My massage is not your massage. Consider how a massage would feel if that charley horse (or corked thigh) you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.I have tried so many things, including several cortisone injections some into my hips and spine (facet joints) massages, acupuncture, rubs, creams, potions, lotions, reiki, acupressure etc., Even though I practice reiki on others with success, self healing doesn't work physically for me!

11. My good days - If you see me smiling and functioning in a way which seems normal, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going. Good days are days where the pain is a little more tolerable and I am in a better place emotionally & mentally - so am able to deal with the pain a little better - that's good right?

12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not only have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have occasional migraines or hip pain or shoulder pain or knee pain, or some random pain but I do understand that I do not have exactly the same pain as anyone else. Suffering from constant daily pain, sometimes extremely severe can however make me a little insensitive to other people's pain - I mean I can relate of course because how could I not when I suffer myself the way I do..?? But.... I do find it hard to offer as much compassion and sympathy as I normally would/could when I'm in such a bad state of pain myself..... I'm not cruel, or heartless, or sadistic or any of those hurtful things people may think (or say to me) - I'm suffering myself!!
If I offer to give you something of myself - then please understand that I am giving a lot - a little massage to you, making a dinner, creating something, cleaning or tidying or sometimes even just sitting listening can cause a demand on my stupid fibro-fogged, pain-ridden body.

I don't want to see anyone suffer - I don't want to suffer either. If I can help, I will - if I can't I will still probably try and probably regret it physically later ... haha.

I hope that this helps you understand me, if you know someone who is suffering FMS or arthritis or any chronic pain problem, then
please be patient with them - love them and give them some of your spoons!!

Also, here's a letter that I found online. It's written to the sufferer from fibromyalgia - it's direct and rather nasty - just like fibromyalgia!! I have typed too much, my elbow & shoulder needs a rest.

If you got this far reading this post - thank you from the bottom of my heart!

The love, support and care from family, friends & even friends I haven't yet met is what keeps me going & helps to keep me positive...... :)


The above explanation is adapted to my personal situation from the original - A Letter From the Land of Fibromyalgia to the World of Normals


  1. This comment has been removed by a blog administrator.

  2. Correction

    Life seems to deal some of us such a raw deal. We know not why we are the ones to suffer and it seems so hard to do what it is required of each and every day what should minimise our suffering. The rules are so harsh and impossable as our bad days. Thank God however for our creative outlets and our loved ones who so dearly seem to understand and support us even though they cannot begin to imagne the true depths of our despair but never the less they make life so much more bearable. Keep positive is all I can say and pray for some miracle cures sometime soon. Brenda Grace

  3. Lorri...I know where you're coming from... I too have FM....and arthritis and have had the Ross River Virus which has made the other ailments worse, but as you say...my pain is mine and may be different to yours...and yes... sleep deprivation caused by pain can worsen the pain...which causes the deprivation in the first place...and pain certainly can age not only one's body but also and worse , one's face!
    Losing one's self in art is probably the best way to cope...keep making it!

  4. What an awful thing to cope with Lorri. But it's obvious from your art that most times you push yourself to rise above it. As Brenda said hope a cure is not too far off in the distance.

  5. Hello Lorri..visiting your blog has made me feel like kicking myself in the shin...and being thankful for what I have...
    I do not experience what you are going through...or have to live with your condition,on a daily basis,as you do.
    I can only say you are an Inspirational soul..and have helped me "Today" to become less of a negative thinker...p.s your artwork is really lovely.

  6. Hi Lorri, thanks for sharing - I hope it helps. I have several minor problems but cannot imagine what it must be like to suffer constantly from so many problems that can effect you in such random ways. I am sure I would not have your fortitude. Sending you a healing hug, and hope you continue to draw comfort and distraction from your artwork, which is great. Love the painting by the way.

  7. Thank you all for your kindness, and support - I really appreciate it. Your visits & comments here on my blog, really do brighten my day :)

  8. I hope you find relief from FMS very soon Lorri, as you certainly deserve it a kind and more generous soul you couldnt find.
    I have loved learning from you and you deal with your pain so graciously never a complaint do I hear.
    Thankyou for sharing your talents, I appreciate our friendship.


  9. Hi Lorri
    I cannot imagine what living with this disease every day of your life would be like..I am glad you can find some peace in doing your art... My thoughts are with you.

  10. Now I understand why you were away for so long after your cruise. This post is wonderfully written and helps me understand your situation. Knowing what I do now of the kind of pain that haunts you, I GREATLY appreciate your ability to create such wonderful Art and maintain your sense of humor. I always love the words you choose for your ATC's. I can relate all too well many times why you choose the words you do. I missed you and your Art while you were quiet and I'm so glad you are back!!! And how, girlfriend, your new work is AWESOME. xoxoxoSusan

  11. Very well said! And a wonderful collage! :) One day I hope everyone (especially doctors!) will truly understand chronic pain and the toll it takes on people (you can count me among them - 9 years and counting).

    I'd love to send you one of my Zetti ATC's you commented on. My email is: scomerford@comcast.net. If you email me your address I'll pop it in the mail. :)

  12. Lorri,
    I have really enjoyed looking through your blog and all of your creative endeavors~ but I am really touched by this post and how informative and open you are about your struggles. It sounds very frustrating on a soul level, and I hope someday you find some relief beyond your art(although it is very neat that art is your therapy!). Thank you.

  13. Lorri,

    Thank you, thank you for being honest and saying what you need to say and I hear you because I am a suffer of the dreaded FM along with other problems too. So smile, be happy, cope with what you are delt and sleep when you can. You made me laugh when you said you drop things constantly, gosh I would love a penny for every time I have dropped the same item over and over again, and I just couldnt help it, I just kept dropping it. Knives are really dangerous too.... VBG ROFLOL. today is ok, tomorrow well we will see............

  14. Bloomin Eck Lorri.
    You are one amazing woman and my heart goes out to you and all sufferers of this vile illness.
    We send you lots and lots of spoons and love as well.
    Robert,Gordon and Harry

  15. The spoons we mean are cuddles by the way.

  16. Thank you everyone, I truly love reading your comments and they do help me to smile :)
    You will now also understand my references to 'spoons' in future and past posts teehee
    I was a little worried about actually posting this post - as I don't like to whinge online (I save that for the unfortunate family) LOL but, after thinking about it I realised this blog is MY blog and like I said in the post - it's for expression and I am not ashamed of who I am, which encompasses all the good and bad :)

    Hugs to you all xoxox

  17. Lorri, thank you for taking the time to explain your symptoms and how the dreaded FM affects you... I've suffered from FM since 1992 (and I am so sick and tired of being sick and tired!)
    Art helps. Sometimes it's all that keeps us going!

  18. Lorri,

    I cannot believe that today I have found you twice...first on face book and now here.
    I want to say that I wish you more GOOD days as it helps to keep going...I dont have your condition (at least I dont think I have )but boy I have a lot of your symptoms and without my crafting and ATC's I would be that couch potato...not because I want to but because the depression would win.
    Love your SOH

    Take care.
    Chriss x

  19. I had no idea that your illness was so complex and the strenght it takes to get on with each day.
    Your art is wonderful, I had heard how talented you are and am glad to see it for myself.
    The sadist thing is that I thought you were only suffering from heartburn and indigestion, which symptoms have a better chance of disappearing.
    My ultra sound today showed that I have eggs around my ovaries, likely due to hormone problems but not the cause of my stomach pain.werid one hey, never heard of eggs doing that before.

    I wish you all the love that you need to get through and will talk to you soon.

    Love Cherie


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